Haldol: The Wonder Drug?

Wonder drug?

I am not a medical expert.

I am not a medication expert.

I know nearly nothing about drugs.

I have never met a pill I wanted to take.

Is that blatant enough about my ignorance so my next thoughts are taken with a grain of salt? Nay, not a mere grain. It would be better to imagine an overflowing wheelbarrow of Morton’s when-it-rains-it-pours overpriced sodium!

Since I’ve confirmed my lack of qualifications, let me share a few biased opinions about . . .

Haldol

Ever heard of it?

In the hospice meetings where medications are discussed, Haldol often appears on the list of drugs for the comfort and care of patients. When noticing it, I thought of my father. And I also thought about families I’ve worked with or heard about over the years that question any drug taken by a loved one. Haldol prompts many of those questions, both the curious and concerned ones.

Developed in the 1950s, and in regular use since the 1960s, Haldol is the shortened version of Haloperidol. According to webmd.com:

Haloperidol is used to treat certain mental/mood disorders (e.g., schizophrenia, schizoaffective disorders). This medicine helps you to think more clearly, feel less nervous, and take part in everyday life. It can also help prevent suicide in people who are likely to harm themselves. It also reduces aggression and the desire to hurt others. It can decrease negative thoughts and hallucinations.

There are many sites like webmd with an unadorned clinical description of Haldol. There are also many cautionary articles about Haldol, where it’s blamed for misery, mistreatment, or even death. Since Haldol has been given to those with Tourette syndrome, a web hunter-gatherer may stumble across references to a 1990 episode of L.A. Law. Jonathon Rollins (actor Blair Underwood) defended a client with Tourette’s. That show was one of the first times that syndrome entered the national conversation. I don’t think “L.A. Law” mentioned Haldol, but any search for the treatment of Tourette, with or without the handsome Rollins defending a client, will include Haldol.

Like morphine, Haldol can scare* people. We don’t want loved ones in pain, but if morphine is mentioned as an option for the physical anguish patients frequently experience, some immediately resist. What if a dying spouse or parent becomes dependent on morphine? What if it hastens death? What if the pain is reduced, but a patient can no longer communicate?

We don’t want loved ones to have “negative thoughts and hallucinations,” but if Haldol is mentioned as an option for the troubling delusions and negative feelings patients can experience, some hesitate or debate or both. As with morphine, the Haldol what-ifs of dependency, side effects, or over-sedation worry caregivers.

In his early nineties and in the later stages of dementia, my father (who died in 2012) had hallucinations. Once, while visiting my parents, Dad became convinced an injured woman was yelling in the backyard. On his wobbly legs, the man who taught me how to throw a baseball and parallel park struggled down the hallway to my room, urging me to help him save the woman. It was raining, near midnight, and there was no movement outside other than branches swaying in the wind. Dad was convinced we must rescue her. Now! I coaxed him back to bed. Thirty minutes later, after hearing movement from his room, I checked on him. He was outside, braced against his walker, on the verge of crossing the rain slick lawn to respond to the imagined screams for help that only he could hear.

He got worse after that night. Delusions. Agitation. Anger. Dementia was never kind to my father.

He would eventually take Haldol. I hated that it flowed through his veins, but was grateful the necessary drug reduced some of his worst symptoms. As his loving son—with memories of backyard catch and family road trips—the conflicting feelings of “hate” and “gratitude” never fully reduced my guilt.

Is Haldol a wonder drug? Well, we may wonder what bad things might happen when it’s used. We wonder if we’re doing the right thing when giving permission for its use. We wonder if the one we love will ever be the same again.

Because it’s easy-peasy to find grim tales on the web, Haldol is accused of being abused in hospitals, at skilled nursing facilities, and by hospice personnel. The dreaded—and sometimes necessary—medications that may help a dying person find relief from pain or agitation, from delusions or aggression, rightly make everyone nervous. But the right dosage in the right circumstance, given by a caring and conscientious medical staff, can provide relief.

If you, as a hospice patient or caregiver, don’t want a drug used, you can say no. In Medicare’s patient’s rights statements, you can “refuse care or treatment.” While Haldol may be perceived as the best response for the patient, all of the kind and compassionate hospice nurses and doctors I have known will seek an alternative if that’s what a family requests.

Truly, it is your right to say, “No.”

But equally truly, there may come a time—a time no one wants and no one is ever prepared for—to listen to the options available for the care and comfort of a patient.

How I wish Dad had never taken Haldol. But in the narrowing, terrible choices available as his dementia worsened, and as his dying loomed, it was one of many treatments that brought a little comfort, and a little calm, in the fierce storm of his final years.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

*I debated which word to use to describe reactions: scare, unsettle, bother, anger, confuse? All of those and more can be responses to Haldol and other “serious” drugs. Your scared (or unsettled or bothered . . .) reactions may increase in anguish unless you share openly and with an open mind to the medical staff helping you.

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Comments

  1. Thank you for your well-reasoned article and was happy to see that the patient or family can refuse treatment with a drug …it needs to be clear from a legal point of view that is an option and that even MD chosen by Hospice must agree…I did a POST FORM for my care as a widow and it was done in conjunction with my MD and my POA for health care, an attorney..I got instant freedom from the concern about who would monitor my care and knowing what I want went a long way to making it happen. Different dementias have different relief meds and looking out for a drug interaction is important as well…Thanks again for the information

  2. Hi Larry , Interesting article thanks. I guess one of the near dearh questions could be, did he/she really see someone )as can happen) or is it a hallucination?

    FYI As a volunteer for Pilgrims Hospice here in Edmonton I am truly exited to be looking forward to their new 12 bed multipurpose facility. The PC unit is state of the art. You can view it at Pilgrims Hospice website.

    Regards,

    Tony

    • Tony:

      I suspect, in some cases, the answer to your question would be “easy.” Specifically, with my father, they were hallucinations. Like others with dementia, he “saw” things there are not there. But, I will also hedge my answer! I’ve had enough experience listening to and supporting others who have seen, heard, smelled things that can’t be explained as hallucinations or delusions or the “mind playing tricks.” Ah, mystery!

  3. Thank you, Larry. All the while I’ve been crying on your shoulder about my guilt in allowing morphine – it never occurred to me you had gone through such agony with drugs. Do you realize how you help us by sharing that part of your story?
    Gratefully,

    Pat

  4. While caring for my terminally ill mother, she became extremely agitated and began frantically going from room to room. She would open all of the drawers and the cupboards repeatedly looking for something she could not verbalize. As this went on for hours, I called hospice in tears saying if this continued I couldn’t care for her anymore. After a home visit, I was told she had terminal agitation, and that compounded Haldol in a cream, applied on the inside of her wrist, would calm her.

    At work, I was well educated in psych drugs. I signed the authorization, went back to work and the gravity of my decision hit me. The Haldol arrived and the result was nothing short of miraculous in my eyes. she became calm and relaxed again. It made all the difference in continuing to care for her.

    • Jennifer:

      Thanks for adding these comments. It is overwhelming when we are caring for a loved one. I am glad the hospice’s suggestion of using Haldol in this way worked for your mother . . . and for you.

    • My mom is on hospice and we are using Haldol for both agitation (mostly restlessness) and nausea. She hates the taste, which causes her to refuse it when she really needs it. I hadn’t heard of Haldol in a cream to be applied to wrists. Are you located in the US ?

      • Elizabeth:

        Thanks for adding your comments. With your Haldol question, it’s best to talk with your hospice nurse or physician.

  5. Like Jennifer our family had a positive experience taking Haldol. My father had us searching every room for items, he became OCD about moving the tv “a bit more to the left, more, more, ok now to the right”. This would go on for hours. If not the tv, the curtains, the bed sheets. The hallucinations got so bad he was afraid “the bugs “ would get him. Haldol worked best for him when given a 3 x per day maintenance dose. He is calm, cognitive and has his sense of humor back.

    • Marla:

      Thanks for sharing about this experience with your Dad. I hope your words help others as they consider Haldol as an option for their loved one.

      Take care.

  6. A caution for you regarding Haldol. The side-effects of it can be horrible: drug-induced Parkinson’s disease, sleepiness, and delayed communication between brain and hands. This may seem like a wonder-drug when prescribed for true psychotic or schizophrenic conditions, but if misprescribed, it could make a dying patient’s misery worse. Though I could see it as being useful in hospice care to treat dementia-induced schizophrenia, long-term use in non-terminal patients results in horrible tardive diskenisia as a permanent side-effect. You also will need to be on the lookout for drug-induced Parkinson’s, which is evidenced by a hunching of the shoulders. That side-effect can be counteracted with Cogentin.

    • Rusty:

      Thanks for your comments. Though I certainly can’t speak for every (or any!) hospice agency, the physicians and nurses I have worked with are extraordinarily careful with how they educate the families and patients about the drugs and do constant follow-up during hospice’s care. Obviously, many “serious” medications are used for comfort and care. A drug like Haldol is not for everyone. But, when used properly, it can provide benefits.

      Again . . . thanks for your thoughts!

  7. I’m starting my mother on Haldol tomorrow. She has liver cancer and is in late stage liver failure; that will take her before the cancer does.
    I just got her signed up for hospice yesterday and after reading all the information I realized my poor mom has been extremely agitated but can’t do much about because she completely reliant on me to get her up.
    I’m hoping I see a difference by tomorrow evening; no more pulling at the sheets and blankets, kicking her feet, etc.
    She took her first dose of morphine tonight and that about killed my soul. She has never really taken more than Tylenol or ibuprofen for pain her entire adult life; she HATES opioids. So to see her willingly and gratefully take morphine I knew she must be in serious pain. I wonder now how long she hasn’t said anything about the pain.??? Damn, strong, independent women can be so harmful to ourselves when we won’t ask for help.

    • Annette:

      I love and also sadly shake my head at your “Damn, strong independent woman” line. That statement is so true for so many. Our stubborn human ways can make support so difficult for the overwhelmed caregiver.

      Thanks for sharing your experience. I hope the Haldol helps. It is potent drug, can bring many different reactions, but when used properly it can also provide relief.

      Take care . . .

  8. Haldol is a horrible drug to give to your loved ones except in extreme circumstances. It turns the person into a non-functioning zombie. Convenient for hospice and carers, but torture for the patient. How do I know? From personal experience.

    I am in hospice due to bladder cancer. Recently I had the Covid followed immediately by a Urinary tract infection (UTI). UTIs frequently cause altered mental states in older adults and that happened to me. Instead of treating the UTI the hospice prescribed Haldol, an ineffective, improper, and extremely harmful treatment choice. (I was treated for the UTI at the local hospital’s Emergency Room.)

    Is this really an improper use of the drug? Perhaps the FDA Black Box Warning will give us clue:

    “Haloperidol is not approved by the Food and Drug Administration (FDA) for the treatment of behavior problems in older adults with dementia.”

    NOT APPROVED. Think about that for a moment. Every time hospice prescribes these drugs without a proper psychiatric evaluation by a qualified psychiatrist, they are breaking the law. And getting away with it. Yes it is convenient for hospice to turn patients into compliant zombies unable to get out of bed or even feed themselves or swallow pills. But for the patient it is chemical torture.

    I do not lightly use the phrase “chemical torture” but it is an apt description. I recall the last day I took Haldol. I woke up early and was able to get up and do stuff. An hour after taking the Haldol my brain and body turned into a quivering mass of jello and I immediately became unable to think or physically function for hours. This is not being calm or relaxed. In fact I could not relax at all.

    At that point I finally understood what the Haldol was doing to me and I stopped it immediately which led to 30 hours of Hell on Earth. I experienced the classic withdrawal symptoms including unable to relax or sleep, hot flashes, agitation, and tremor. I was able to moderate the worst of it by taking a single drop of Haldol under the tongue once a hour, then later once every two hours, until finally the worst was over and I could rest and sleep.

    On the bright side I was able to completely clean the bathroom, including the bathtub which I had not cleaned for a few months.

    Don’t believe the rubbish about “you can always say No”. It is very difficult to say no under the duress and less-than-clear thinking imposed by being sick and the pressure from the hospice staff. It was only when I understood the harm it was causing together with the FDA Black Box Warning that I was able to stand my ground.

    All the literature says “do not stop its use on your own without consulting your physician”. And exactly what physician could I have consulted with, since they were insisting I should keep taking the stuff?

    Any physician who prescribes this dangerous medication without a proper psychiatric evaluation is committing malpractice and needs to be held to account. I am now in the process of doing this, but it’s pretty damn difficult to sue your doctors while dying, especially since I would rather be doing almost anything else instead of fighting with doctors and lawyers during the last weeks/months of my life.

    If physicians were required to take Haldol for a week then experience the joys of withdrawal for themselves, prescriptions for Haldol would drop to near zero. There are many drugs and approaches to deal with patients who are agitated and confused. Haldol should almost never be one of them.

    • Jimells:

      Thanks for this. I will still stick with what I said in my post: saying no is an option. But I know you are also correct in that there are far too many circumstances where a “no” is not expressed because patients and families don’t think they can say “no” to a drug or, worst yet, ignored by nurses and physicians when they do. I hope others read your words as a way of understanding Haldol’s high risks.

  9. You wrote:
    I am not a medical expert.
    I am not a medication expert.
    I know nearly nothing about drugs.
    I have never met a pill I wanted to take.
    Is that blatant enough about my ignorance….

    Yes, so I’m posting this comment and closing the article.

    I’m not sure if that was supposed to be just a bit self deprecating, or witty… But self proclaimed ignorance is not a virtue. We get enough of that from others.

    Thanks for your honesty.

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